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Jakub and Tilly on what they love about the CF Youth programme

Feature - 05/04/2023

Do you love playing video games with your friends? Reckon you could give Ed Sheeran a run for his money in the singing stakes? Maybe you’re passionate about speaking up on important issues relating to your CF? Our CF Youth Programme is for you! We have loads of social events, workshops and opportunities for young people affected by CF to get involved with. Here’s Jakub and Tilly to tell you more!

For children and young people living with CF there can be a lot to ge Tilly t your head around. Our CF Youth Programme gives young people a space to explore their feelings around CF, to connect and chat with other people going through the same thing, and to have a lot of fun and learn new things too!

Tilly’s story

Hi, I’m Tilly. I’m 14 and I love reading and acting. I’m part of the Trust’s Youth Advisory Group (YAG) and I love it! I love being able to chat with the other members and work on different projects with the Trust.

Our latest project is a dictionary for young children with CF. I think other young people should get involved in YAG because it gives you a time in the week to relax with people who actually understand about the medical part of your life. It’s also made me more aware of my own condition, and now I know that others are going through the same thing, not just me.

If I had to describe YAG in three words they would be: inclusive, important and exciting.

My older brother joins some activities with me and it helps him to understand CF better.
Jakub

Jakub’s story

I’m Jakub, I’m 10 and I have CF. I love any water activities like swimming and water polo, as well as playing football and gaming. I really like doing all the youth activities with the Trust, especially the film nights when we can dress up and join online with other children.

We have loads of fun together by playing silly games and watching great movies! I also really like joining the gaming nights because it’s my only chance to connect with other children with CF and play with new friends. Meeting with other children online is super nice because we all have CF and we can’t meet in real life. It’s great to speak to children that understand how I feel. My older brother joins some activities with me and it helps him to understand CF better.

I am so happy that the Trust does all that for us. Everyone is so nice and it’s really fun being a part of it.

If you, or anyone you know wants to take part in all that CF Youth has to offer, you can get in touch with us at [email protected]. Follow us on Instagram and Twitter at @CFTrustYouth.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

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